Pediatric End-of-Life Care in Rural America: A Systematic Review

2021 ◽  
pp. 104990912110642
Author(s):  
Whitney Stone ◽  
Jessica Keim-Malpass ◽  
Melanie J. Cozad ◽  
Mary Lou Clark Fornehed ◽  
Lisa C. Lindley
Keyword(s):  
Systematic Review ◽  
Rural Communities ◽  
End Of Life ◽  
Rural Areas ◽  
End Of Life Care ◽  
Pediatric Care ◽  
Future Research ◽  
Rural Children ◽  
Life Care ◽  
Rural America

Background: Families increasingly desire to bring their children home from the acute care setting at end of life. This transition includes home to rural or remote areas. Little is known about the end-of-life care for children who reside in rural areas. Objective: The purpose of this study was to comprehensively review and summarize the evidence regarding end-of-life care for children living in rural areas, identify key findings and gaps in the literature, and make recommendations for future research. Methods: A systematic review was conducted from 2011 to 2021 using MEDLINE and CINAHL databases. Results: Nine studies met inclusion criteria. Key themes from the literature included: barriers, facilitators, and needs. Three articles identified barriers to end-of-life care for children in rural communities, which included access to end-of-life care and clinicians trained to provide pediatric care. Three studies identified and evaluated the facilitators of end-of-life care for rural children. The articles identified technology and additional training as facilitators. Four studies reported on the needs of rural children for end-of-life care with serious illness. Conclusions: We found major barriers and unmet needs in the delivery of rural pediatric end-of-life care. A few facilitators in delivery of this type of care were explored. Overall research in this area was sparse. Future studies should focus on understanding the complexities associated with delivery of pediatric end-of-life care in rural areas.

Family Caregivers’ Pain Management in End-of-Life Care: A Systematic Review

2016 ◽  
Vol 34 (5) ◽  
pp. 470-485 ◽  
Author(s):  
Nai-Ching Chi ◽  
George Demiris
Keyword(s):  
Systematic Review ◽  
Pain Management ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Experimental Studies ◽  
Care Team ◽  
Cochrane Library ◽  
Future Research ◽  
Life Care

Context: Pain management was the most identified burden faced by family caregivers in end-of-life caregiving. Objectives: To synthesize current scientific evidence on family caregivers’ experience of pain management in end-of-life care. Methods: A systematic review was conducted using CINAHL, Embase, PubMed, and Cochrane Library electronic databases. Data were extracted from each included paper and organized into tables to synthesize the findings. Results: Fourteen research papers focusing on family caregivers’ experience of pain management and strategies in end-of-life care were included. Nine were observational studies, 3 were case studies, and 2 were experimental studies. These studies mainly focused on exploring family caregivers’ engagement in pain management and communication with the hospice care team about pain control; family caregivers’ knowledge, skills, and self-efficacy in pain management; and family caregivers’ concerns and experience of pain management. Conclusion: This review identified themes similar to previous reviews on family caregivers of patients with cancer or in palliative care: inadequate knowledge and assessment skills in pain management, misunderstanding of pain medications, and poor communication with the care team. Future research should design educational programs and material for family caregivers to improve their pain management knowledge and skills, communication, and engagement in care. The scientific knowledge on this topic is scarce, and level of evidence is low; it is therefore imperative to have more exploratory studies to expand the quality and quantity of evidence and increase our understanding of family caregivers’ needs and barriers to pain management based on larger and more diverse patient and caregiver samples.

scholarly journals Impact of the COVID-19 pandemic on end of life care delivery in care homes: A mixed method systematic review

2021 ◽  
pp. 026921632110298
Author(s):  
Adam Spacey ◽  
Sam Porter ◽  
Michele Board ◽  
Janet Scammell
Keyword(s):  
Systematic Review ◽  
End Of Life ◽  
End Of Life Care ◽  
Service Providers ◽  
Care Delivery ◽  
Care Homes ◽  
Current Evidence ◽  
Future Research ◽  
Life Care ◽  
The Impact

Background: Current evidence suggests that COVID-19 is having a negative impact on the delivery of end of life care in care homes around the world. There is a need to collate current evidence to provide a comprehensive overview to assess extent of the problem. Aim: To describe and evaluate the impact of the COVID-19 pandemic on end of life care delivery in care homes. Design: Systematic review and narrative synthesis of studies reporting qualitative and quantitative data. Data sources: The databases MEDLINE, psycINFO, SCOPUS and CINAHL were searched between December 2019 and March 2021. Results: Nine studies were included. For care home staff, challenges included significant increases in responsibility and exposure to death, both of which have taken an emotional toll. Results indicate that staff tended not to be offered adequate emotional support or afforded the time to grieve. For those receiving end of life care, results indicate that the end of life care that they tended to receive, especially in the form of advance planning, was disrupted by the pandemic. Conclusion: The effect of the pandemic has been to exacerbate existing problems in the provision of end of life care in care homes for both service providers and users, making that which was previously opaque starkly visible. Future research is needed to explore the effects of the pandemic and its management on those receiving end of life care in care homes and their significant others.

scholarly journals Reciprocal Dynamics of Dignity in End-of-Life Care: A Multiperspective Systematic Review of Qualitative and Mixed Methods Research

2019 ◽  
Vol 37 (5) ◽  
pp. 385-398
Author(s):  
Ping Ying Choo ◽  
Geraldine Tan-Ho ◽  
Oindrila Dutta ◽  
Paul Victor Patinadan ◽  
Andy Hau Yan Ho
Keyword(s):  
Systematic Review ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Mixed Methods Research ◽  
Family Care ◽  
Well Being ◽  
Future Research ◽  
Life Care ◽  
Wide Range

Background: Preserving terminally ill patients’ dignity and well-being through dignified and holistic care has become the overarching goal in palliative care services. However, dignity is a multifaceted concept with a wide range of interpretations under different cultural contexts. Aim: The aim of this review is to understand the variations in subjective interpretations and constitutions of dignity in palliative or end-of-life care via an integrative worldview. Design: This systematic review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guideline and used SPIDER tool to screen for appropriate and relevant articles for analysis. Data Sources: Four major databases were searched including CINAHL, ERIC, Medline, and PsycARTICLES between 2009 and 2018. Forty-eight qualitative studies that examined dignity from the perspectives of patients, family caregivers, and health-care professionals were selected for full text data analysis using thematic synthesis. Results: Analysis of the various concepts of dignity revealed 18 themes that were further categorized into 7 conceptual categories: (1) self-determination, (2) existential liberty, (3) relational connectedness, (4) caregiving revitalization, (5) mindful humanity, (6) patient–family care, and (7) sustainable culture. These 7 categories span across individual, familial, and institutional dimensions, forming a new Dynamic Reciprocity of Dignity model. Conclusions: The Dynamic Reciprocity of Dignity model highlights the importance of adopting a systemic lens to address dignity-related needs and concerns at the end of life, while providing insights on how compassionate care and self-compassion can serve as the foundation of dignified care, which in turn serve as a buffer against patients’ existential suffering as well as caregivers’ burnout and fatigue. Recommendations for clinical practice and future research directions are discussed.

Pediatric End of Life Care: Impact of Islamic Faith

2021 ◽  
pp. 019394592110165
Author(s):  
Shahad A. Hafez ◽  
Julia A. Snethen ◽  
Emmanuel Ngui ◽  
Julie Ellis ◽  
Murad Taani
Keyword(s):  
Saudi Arabia ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Experience ◽  
Primary Caregivers ◽  
Positive Influence ◽  
Future Research ◽  
Life Care ◽  
Beliefs And Practices ◽  
Education Practice

Studies investigating children and families’ experiences at end of life in Saudi Arabia are limited. However, one factor found to have an impact on patient and primary caregiver end of life care is Islam. Since women are the primary caregivers for children in Saudi Arabia, the purpose of this study was to explore the perceptions of Muslim women caring for a child at end of life. Using a qualitative approach, interviews were conducted with 24 female primary caregivers caring for a child at end of life. Thematic analysis was used to analyze the data. The researchers found that Islamic beliefs and practices had a positive influence on primary caregivers’ experiences. Islamic beliefs and practices helped support participants through their child’s end of life experience. Results have implications for health care education, practice, policy, and future research on end of life in Saudi Arabia other Muslim countries.

scholarly journals Music therapy for end-of-life care: An updated systematic review

2016 ◽  
Vol 30 (9) ◽  
pp. 877-883 ◽  
Author(s):  
Tracey McConnell ◽  
David Scott ◽  
Sam Porter
Keyword(s):  
Systematic Review ◽  
Music Therapy ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care

scholarly journals What role do Death Doulas play in end‐of‐life care? A systematic review

2018 ◽  
Vol 27 (3) ◽  
pp. e82-e94 ◽  
Author(s):  
Deb Rawlings ◽  
Jennifer Tieman ◽  
Lauren Miller‐Lewis ◽  
Kate Swetenham
Keyword(s):  
Systematic Review ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care

13 Exploring patient safety incidents arising from advance care planning for end of life patients: a mixed methods analysis of incident reports

2018 ◽  
Vol 8 (3) ◽  
pp. 364.2-365 ◽  
Author(s):  
Toby Dinnen ◽  
Huw Williams ◽  
Simon Noble ◽  
Adrian Edwards ◽  
Joyce Kenkre ◽  
...  
Keyword(s):  
Systematic Review ◽  
Patient Safety ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Advance Care ◽  
Incident Reports ◽  
Patient Safety Incidents

IntroductionAdvance Care Planning (ACP) is an important component of patient centred end-of-life care (Houben et al. 2014; Brinkman-Stoppelenburg et al. 2014). However there is little evidence available on the safety of the process and its impact on quality of care.AimTo characterise the nature of patient safety incidents arising around the ACP process for patients approaching end-of-life.MethodThe National Reporting and Learning System (NRLS) collates patient safety incident reports across England and Wales. We performed a keyword search and manual review to identify relevant reports between 2005 and 2015. A mixed methods process combining structured data coding and exploratory descriptive analysis was undertaken to describe incidents underlying causes and outcomes. A thematic analysis identified areas on which to focus improvement initiatives.ResultsWe identified 67 incident reports in which patients experienced inadequate care due to issues with implementation of ACP. The most common source of error was (mis)communication of ACP (n=27) where documentation was lost or verbal handover was inaccurate. Over one third of reports (n=24) described an ACP not being followed. In the remaining reports (n=16) an ACP was not completed despite being appropriate. The most common contributory factor was inadequate staff knowledge (n=18). Common outcomes were cardiopulmonary resuscitation attempts contrary to a patient’s wishes (n=18). Other outcomes included inappropriate treatment or transfer/admission.ConclusionOur national level analysis identifies key priorities which should be explored in local contexts: specifically improving public and staff understanding and engagement with ACP and developing systems for recording and accessing ACP documentation across healthcare services.References. Brinkman-Stoppelenburg A, Rietjens JA, Van Der Heide A. The effects of advance care planning on end-of-life care: A systematic review. Palliative Medicine2014;28:1000–25.. Houben CH, Spruit MA, Groenen MT, Wouters EF, Janssen DJ. Efficacy of advance care planning: A systematic review and meta-analysis. Journal of the American Medical Directors Association2014;15:477–89.

Patient and Family Engagement in THE Conversation

2017 ◽  
pp. 93-113
Author(s):  
Jennifer Freytag ◽  
Richard L. Street Jr.
Keyword(s):  
Health Outcomes ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Engagement ◽  
Future Research ◽  
Life Care ◽  
Patient Centered ◽  
Communication Framework ◽  
Communicative Functions ◽  
Main Ideas

This chapter uses a patient-centered communication framework to examine observational studies of patient and family engagement in communication about end-of-life care. It analyzes how the literature has connected communication with health outcomes in end-of-life care. Within this analysis, it brings together three main ideas. First, family plays an important and overlooked role in communication about end-of-life care. Second, the literature describes communication that serves multiple functions, and it describes the special challenges presented by end-of-life care communication. Finally, it links these communicative functions with health outcomes and outlines directions for future research.

Advance directives: the emerging body of research

1999 ◽  
Vol 8 (1) ◽  
pp. 514-519 ◽  
Author(s):  
BB Ott
Keyword(s):  
End Of Life ◽  
Advance Directives ◽  
End Of Life Care ◽  
Demographic Data ◽  
The Body ◽  
Future Research ◽  
Computer Search ◽  
Life Care ◽  
Study Selection ◽  
New Procedures

BACKGROUND: With the passage of the Patient Self-Determination Act in 1990, new procedures and documents became available for planning end-of-life care. These new procedures and documents are now being examined scientifically. OBJECTIVE: To review existing research on the use of advance directives. DATA SOURCES: Computer search using Grateful Med software from the National Library of Medicine with MEDLINE and BIOETHICSLINE databases. STUDY SELECTION: Studies that showed an emerging consensus or reported vastly differing results were selected. Selected studies examined these specific areas: demographic data on patients with advance directives, completion rates, capacity to complete, patients' preferences, stability of patients' decisions over time, treatment choices, proxy decision makers, treatment provided, and cost. RESULTS: The body of important research about advance directives is growing. A profile of their clinical utility is emerging. CONCLUSIONS: The research done so far can stimulate future research and can begin to suggest possible changes in practice. However, the body of research is not yet large enough or well controlled enough to answer conclusively many of the questions about planning of end-of-life care.

scholarly journals Relational autonomy: what does it mean and how is it used in end-of-life care? A systematic review of argument-based ethics literature

2019 ◽  
Vol 20 (1) ◽  
Author(s):  
Carlos Gómez-Vírseda ◽  
Yves de Maeseneer ◽  
Chris Gastmans
Keyword(s):  
Systematic Review ◽  
Decision Making ◽  
End Of Life ◽  
End Of Life Care ◽  
Real Life ◽  
Care Ethics ◽  
Relational Autonomy ◽  
Life Care ◽  
Philosophical Foundations ◽  
Respect For Autonomy

Abstract Background Respect for autonomy is a key concept in contemporary bioethics and end-of-life ethics in particular. Despite this status, an individualistic interpretation of autonomy is being challenged from the perspective of different theoretical traditions. Many authors claim that the principle of respect for autonomy needs to be reconceptualised starting from a relational viewpoint. Along these lines, the notion of relational autonomy is attracting increasing attention in medical ethics. Yet, others argue that relational autonomy needs further clarification in order to be adequately operationalised for medical practice. To this end, we examined the meaning, foundations, and uses of relational autonomy in the specific literature of end-of-life care ethics. Methods Using PRESS and PRISMA procedures, we conducted a systematic review of argument-based ethics publications in 8 major databases of biomedical, philosophy, and theology literature that focused on relational autonomy in end-of-life care. Full articles were screened. All included articles were critically appraised, and a synthesis was produced. Results Fifty publications met our inclusion criteria. Twenty-eight articles were published in the last 5 years; publications were originating from 18 different countries. Results are organized according to: (a) an individualistic interpretation of autonomy; (b) critiques of this individualistic interpretation of autonomy; (c) relational autonomy as theoretically conceptualised; (d) relational autonomy as applied to clinical practice and moral judgment in end-of-life situations. Conclusions Three main conclusions were reached. First, literature on relational autonomy tends to be more a ‘reaction against’ an individualistic interpretation of autonomy rather than be a positive concept itself. Dichotomic thinking can be overcome by a deeper development of the philosophical foundations of autonomy. Second, relational autonomy is a rich and complex concept, formulated in complementary ways from different philosophical sources. New dialogue among traditionally divergent standpoints will clarify the meaning. Third, our analysis stresses the need for dialogical developments in decision making in end-of-life situations. Integration of these three elements will likely lead to a clearer conceptualisation of relational autonomy in end-of-life care ethics. This should in turn lead to better decision-making in real-life situations.

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